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Friday, May 25, 2012

Get Control of Needle Fatigue

Certainly, I bet most of us who are on one of the injectable drugs
(Copaxone, Rebif, Avonex, Betaseron, Extavia) started out with intense trepidation about
injecting ourselves when we started treatment. If I told each of you to think
back to that first moment where you (or a loved one) were holding a syringe,
knowing that the medication that it contained had to enter your body through
that sharp silver needle, I am pretty sure that this is one of those
emotionally-charged moments that is permanently seared into your memory.

But, one way or another, most of us have managed to ratchet
down our terror of the needle to strong dislike for the whole process. And so,
week after week (or day after day, depending on your medication), we stick
ourselves. Yes, it hurts. Yes, it is annoying. Yes, it takes time and sometimes
leaves marks. Yet, we keep on injecting.

Then comes what I think of as the moment of enlightenment.
It's that day when you miss an injection for one reason or another. After a
moment of shock, it registers with you that nothing is really different after a
missed injection, except you didn't experience that moment of pain or the
lingering ache at the injection site. You got to see what it was like to be a
"normal" person, someone who never injects medication into his or her
body. You realize it is kind of awesome to be that kind of person.

This, at least for me, started me down a path of fighting
temptation, the temptation to just give myself a break from my daily injection
every so often. It also opened up a window to feelings of being tired of it,
just sick of the whole thing. When I first started on treatment, I was
listening to the people who told me that I was "lucky" to have MS at
a time that there were so many treatment options available to me. I convinced
myself that it was a privilege to inject myself every day, as the medication
was not available in the past or even currently, to some people. I didn't like
the injection, but I did it because I was supposed to.

However, once I realized I was tired of it, I was suddenly
really, really tired of it. I would be surprised by unexpected tears when I was
unwrapping my syringe. Hitting a nerve now brought on rage, whereas before I
would have just whimpered a little and carried on. For the first time, I used
the words, "It's just not fair!" This was a low moment in my life
with MS, but it was how I felt and I poured my negativity into my feelings
about that syringe.

Since I didn't want to quit treatment altogether, I knew I
had to reign in these feelings a little before they spiraled out of control.
Here are two of the things that I do to help me fight "needle
fatigue":

Have a ritual: I try to do the same thing every day and just
insert the injection into the middle of more pleasant things that I do. I
inject myself after a hot shower and before I have a cup of hot tea and snuggle
my dogs and my husband on the couch at the end of the day. Having something
nice afterwards reduces my feelings of resentment at the whole thing and turns
it more into an annoying chore that is rewarded when it's done.

Play music that you like: This may be just enough to
distract you or lift your mood while you inject. It may be that you love to
hear Pachelbel Canon in D lilting through the air. Others may love to blast
some heavy metal that makes them feel invincible or a specific song that
reminds them of a happy moment. Choose what works for you.

Talk to a friend: I have a friend that I can call if my shot
hurts more than usual or if I just want a little sympathy. She always knows
what to say and before I know it, we are discussing things that completely take
my mind off of the whole thing. There are times when a phone call with her is
my "reward" for getting through my injection. Reach out to loved ones
who will support you and tell you that you are great. Avoid people who might
tell you to "stop being a baby" or "that things could be
worse" – injection time is not the occasion for "tough love."

Congratulate myself occasionally: As many of you have
probably noticed, the mention of self-injection to people without MS often
brings gasps of horror and cries of "I could never do that!" We all
probably felt that way before we started injecting ourselves, but we worked
through these feelings and now we do the unimaginable, every week or every day.
That is an accomplishment.

There are other tips and ways that I trick myself into
getting the medicine into my body, but I think we all have to find our own way
here. It is important to realize that needle fatigue is normal, but needs to be
dealt with, rather than just noticing that you don't seem to be injecting your
meds very much anymore or allowing yourself to begin really dreading the
injection process. Recognize these feelings, do what you need to in order to work
through them and get on with the rest of your life. Remember, the actual
injection only takes a moment. Allowing it to become bigger than that is a
waste of time and emotion that could be spent doing something much, much more
pleasant.

What about you? What little tricks do you have to get
through the moments when you just don't want to stick yourself? Share your
story with others.

34 comments:

Thank you for writing this and sharing your tips. It helps me to know that others feel the same way I do at times. I spend a lot of to e feeling really guilty about hating my injections- I won't anymore.

Thanks for writing this. Never thought to call what I felt as needle fatigue but that is exactly what it is. One of my 'tricks' to avoid the 'maybe just this once I can skip' temptation is knowing that if I skip once, it will be easier to skip again. I also reward myself on the milestone shots with a trip to the music store or something else that I don't need but do enjoy. Icing down my injection site has helped a bit with the pain but mostly though, my wife is great at saying at just the right moment 'I'm sorry you have to do this and I'm really proud of you'.

I've recently been having severe needle fatigue... to the point of considering oral medication. We are planning on starting a family soon, and I look forward to being excused from daily injections! I don't want to get pregnant solely to stop injections though.

When my husband is home (he works on the road) he has started doing the injection for me. I still have to deal with the pain and annoyance, but it does help to not have to actually deal with the needle. He feels bad hurting me, but he knows it would hurt either way and is thankful he can help in this little bit.

I am trying to discipline myself to not hate it though. I don't think about this being a lifetime, or I get really down. I force myself to be positive, as much as I can... I still don't like the needle though.

..."you got to see what it was like to be a 'normal' person..." When I read that, tears streamed down my face because I can't remember what it feels like to be "normal" anymore. I bribe myself with a reward after my injections, and to make myself take them, I remind myself that the injections play a significant role in my being able to continue walking. Thank you for writing this. You helped me realize I do resent my injections and I need to deal with my feelings about them.

Evening injections frustrated me also. I have the welts and itching and found it easy to NOT inject when I would fall asleep reading or watching television. My doctor was upset with me when I admitted I stopped taking Copaxone all together. We agreed I would do another 3 months of injections and we would revisit my issues. To help ensure I stayed true to my word - I started injecting in the morning. Making it part of the morning routine has helped me a lot. Instead of dreading it, I think "I need to take care of me first." Then I get so busy with my day, I don't notice the reactions as much.

Just a tip for you Bonny that I have discovered over time regarding the itching and welts that may or may not occur from time to time. My husband once had an alergic reaction to a spider bite that inflamed his entire arm. The pharmacist recommended Benadryl spray and it worked so I thought hmmm wonder how it would work on injection site irritation and found it was a blessing. Also before that I had used Salonpas patches which helped but not as well as this spray. Give it a try sometime. Good luck

I've been doing this now since 1994 when I was diagnosed. Throughout the years I've experienced the same feelings of frustration and despair "why me".However, I've come to accept my injection as a necessity of my life or at least I think I have.Ok so what I do is change up the injection sites according to the season to avoid those dastardly red marks and/or bruises.For example, arms in the winter, thighs in the fall, and stomach and hips in the spring and summer. Always watching out for the dreaded scar tissue which through experience can be eventually avoided. In all I am hoping that the FDA approves an oral drug to treat MS as to make our injections a thing of the past. Sincerely, Lucia M.Ault...lcault@cox.net

I have a glass of wine and drink a little before the injection and save some for after. It relaxes me and the injection doesn't sting or pinch quite as much. Watching a favorite television show helps as well. Thanks for sharing your tips.

I was on Avonex from November 1998 until September 2010 (started Gilenya then). I had always thought that after years of doing it, it would just become a part of my routine and get easier ... but it never did. I dreaded "shot day." What made it even harder is the medicine does nothing to make you feel any better. The way I made it through all of those years was continuously telling myself that the injections were protecting my future self. Now, 14 years after beginning treatment, I know that it was worth it. I have had a few relapses over the years, but thankfully, no permanent disability.

It's encouraging to hear someone who did it for a long time say it was worth it. Doctors and literature say it is, and I know they're right, but it sure helps for one of "us" to say it from experience. I hope Gilenya works well for you. Until my shots stop controlling my MS, I'll take them, but it sure is nice to know oral meds are available as an alternative.

I worry a little that Gilenya is so new, but then I remind myself that Avonex was fairly new when I started it too. Sometimes I wish I could visit a parallel universe to see if I would be any worse off without the meds ... but since that is not practical as of yet, guess we're stuck injecting or popping pills. My neuro wanted to switch me from Avonex to Rebif as I had had 2 fairly close relapses and she thought it might be time to change from the Avonex, but I couldn't see taking more shots each week of essentially the same medicine because even after all those years, the side effects were still pretty bad ... so that's when she referred me to a drug study that was testing Gilenya. (Coincidentally, within 2 weeks of my starting the study, it got it's FDA approval ... but at least I got it for free for a while.) Hang in there ...

I simply cut the time involved! Like most people, I was disturbed by the experience of giving myself an injection when I first started on Copaxone, but the self-injector contraption helped me to work through that. Over the years, though, I found that the process of gathering, loading, and using the injector became the most tedious aspect, so I quit using it. The whole medication process now takes about 30 seconds. Maybe more like 15 seconds. I've been on Copaxone since before it was FDA approved and rarely feel the needle stick at all anymore.

I had to switch from Copaxone for a couple of reasons, but one primary reason was because of needle fatigue. I realized that the week I skipped one day turned into a couple of weeks of skipping several days. I realized that the medicine could never work for me if I didn't take it. And I got to the point where I just couldn't do it on a daily basis. Switching to Rebif (3x/wk) helped tremendously, but caused it's own set of issues. But I haven't skipped a dose yet.

I am so afraid to let a day pass without my shot. I went a good amount of time undiagnosed,what was thought of as just arthritis was confimed in the summer of 2011 as MS. My lessions were so many and old that after one head scan, it was possitive. After going at least 15 years, I am so afraid of loosing my ability to walk. I make sure I take my copaxone early enough so I can do some kind of chore afterwards and help keep my mind off the pain. The shot is easy, the pain afterwards is what gets me.

I've been taking Copaxone for just over 2 years. And doing the same thing every day has been crucial to me staying disciplined. I put on a record. Sometimes, with intent. There's a Wilco song that starts a side of Being There with the lyrics, "alcohol and cotton balls, and some drugs we can't afford on the way." It gives me an ironic smile. But yeah. I always listen to music. I also benefit from taking a moment to control my breath and be present in what I am doing. For me, accepting it to be what it is -- sticking a needle inside of me every day -- has been the most important thing for my disposition and personal experience with MS. But I've been thinking of exploring something besides Copaxone. I am very skinny and it has become more and more difficult to find available fat. I can't use the Autojector and I am scarring my body. I put a huge deep bruise on my belly, one that ended up scabbing over. It happened in October of last year. And I still have a light bruise and a raised pink scar that my neurologist told me might be there forever. Exact words: "I've seen this in the books, but never in real life."

Last night as I tossed my injection refuse into the trash, the term "injection fatigue" crossed my mind. I was on Copaxone from December to February, until I had an Immediate Post-injection Reaction and an allergic reaction at the same time. Scariest moments of my entire life. I was alone in my house and my throat started to close up. My doc switched me to Rebif and I have been on that for three months now (I am an MS newbie). I am thankful that I have not experienced any negative side effects, but I swear the Rebif needle is thicker, because it hurts like hell. I hate pressing the button on my injector, because I know what follows. On the Copaxone I felt like I was giving myself a power shot because the injections would keep me strong. Also, I hardly felt it, so it was NBD. I am trying to find a similar mindset for the Rebif. I do look forward to the Benedryl I take with it, because I get a great nights sleep :)

Thank you to everyone who shared tips on getting through this. This blog post was so well timed for me. I have been encouraged to power through this phase.

I want to thank you for sharing your secret, i have only given myself one injection since i was diagnosed in may 2010, imy boyfriend has been doing it for me, and i honestly hate it, that i let the needle terrify me, as i read your blog you have given me options to try and maybe relax my mind and think of good things that come after my injection. i am told that i am stubborn and i agree that it is true. But i have to do this....... Thank you god bless.

Thank you for writing this. I felt like such a big baby, but after 8 years of injecting, I began dreading the whole process. Reading this article made me choke up, I fought back tears. Skipping did make me feel "normal" and that feeling was addictive!!My Doctor (gratefully) switched me to Gilenya, but not because I complained about injecting.It hasn't been until this article that I understand I AM NOT ALONE.I know I may have to return to injecting one day, and your tips seem great!

Like many, I do Copaxone and the whole procedure can take about 30 seconds from loading injector to tossing needle into sharps container. My fatigue comes not so much with the sting & annoyance of the needle; rather, it is the lipatrophy, the hardening of the fat layer around the injection sites, that has me, well, whooped. It matters not that I follow a regiment of site rotation, my body looks like hell after almost a decade of pokes. Part of me would absolutely love a drug that you infuse once a year.

I got to say just take the shot.How many years did you wait and know what you have before you got the right Doc. I could say for me it was 10 years before finding the best Doc.She found it, and now I'm feeling better (for the most part).So I say again just take the shot, the pain goes away. MS Don't

I'd never heard it refered to as "needle fatige", but I like being able to put a name to it now. I feel it nearly every day and it often gets the best of me. I probably miss 5 or so injections a month and it gets easier and easier to miss more and more when the only side effect I see is a day without pain and welts. I try not to miss more than one shot in a row, but its so easy to finda any excuse to miss a day. As a matter of fact, I missed my injection today. I could do it now, but my excuse is that, well, if I do it now it will be too close to my shot tomorrow. It's nice to know that many others are in the same boat, but it doesn't make it any easier to want to prick myself.

I find it interesting when people complain about having to inject once a month, once a week or even once a day. I have diabetes and between insulin and Copaxone face 5 and sometimes 6 injections a day not to mention 4 plus finger sticks to check blood glucose levels. If you sit there dreading having to inject yourself and the brief moment of discomfort you only make it worse on yourself. Your injection is just a tiny moment out of your life and nothing to be concerned about. A moment of mild pain at worst and then on with your day. Dealing with injecting yourself is all about attitude, don't give it any more impact on your life then it merits.

I dread my shots too, but not so much from the needle. I have no trouble poking myself. And I inject super slow (it takes about 2 minutes) because Rebif is so acidic and it burns when it goes in. But starting anywhere from 1/2 hour to 3 hours after the shot, I feel so crappy - feverish, body aches, wiped out and it lasts 12-18 hours, so the shot & it's effects takes up a lot longer than a few minutes. I do my shots in the evening and try to be asleep before the effects hit, but I often don't make it. I tried mornings, but I barely made it through the day at work when the effects hit. And my site reactions hurt for weeks. I'm actually running out of sites because I don't want to inject into a red swollen tender area again until it's healed. I've taken other shots (insulin, B12, depo, etc) but Rebif is a different animal.

I used to get anxiety attacks right after I gave myself a shot in the arm. (Copaxone User) I've never experienced an anxiety attack until I started my meds. I told myself that I can skip my arms and just get it done. I hate it, I hate the fact that I have to numb an area and the bruised affect I now have because of it. I just remember how much I hated feeling like a lab rat in the hospital when I got diagnosed. They didn't explain much to me and I had horrible nurses. I'll take a welt over that feeling of impediment doom any day.

Thank you so much for sharing your story and tips. I have had many injection problems over the years; I used to use the auto inject but that left bruises and marks and one day I noticed in horror that I looked pretty beat up. So I now do 'manual' injections with Copaxone, but I can't inject my arms or stomach as I always get a very painful reaction. So I'm stuck with the hips and legs, and I only do the sides of both, so I have an increasing amount of hard spots that can't be injected. For this reason I have taken a day off a week to 'give myself a rest'. Its reassuring to know that I'm not alone in this dread and I do give myself a 'pep talk' beforehand and call Copaxone my magic liquid as it has helped me tremendously. So for that reason I keep plugging along. I found that getting it over with in the morning is the best for me, as I'd find an excuse to not do it at night (too tired, too busy, anything!) In the morning right after I brush my teeth I shoot then reward myself with breakfast! And then I don't need to worry about it for the rest of the day.

Oh my god!! I think you were talking directly to me! That was perfect timing for that article! It's been over 7 years of injecting for me - and that's exactly what happened - you miss a shot - and don't notice a big difference - and then enjoy missing a shot here or there and it's a slippery slope! Thank you for that article. My doctor told me to think of it as a B12 shot - that is an automatic power booster for what your body needs. That helps a bit. Mostly I just have to congratulate myself when it's done for doing it. the idea of rewarding yourself is a good one as well - I'll have to look into that too. Thank you so much for speaking everyone's mind!

I've been taking Avonex for a few yrs but then my company changed hands and our insurance chang so I wasn't covered for bit so now I haven't been doing my shots and I just can't do it any more I just can't bear it I want another way with out it being a shot. I know my doctor will be upset. I just want to cry thinking about ever starting up again. Can't do it. My numbness has intensified in my right hand that it hurts sometimes is that cause of not taking the shots. Just don't know what to do.

I understand how you feel. I was on Avonex for 13 years. Then I developed a terrible tremor in my hands making it difficult for me to inject my self. For years I didn't mind doing it at all. But it got so it was extremely difficult to give my self the shot. There was no autoinjector. So I switched to rebif. I loved the autoinjector & it was much easier to give the shot. But rebif really hurts. You are supposed to massage the area afterwards & that's what really hurts. And it was 3 times a week. When the Avonex pen came out I switched back. Now I feel like I'm not taking anything. It's only once a week, it doesn't hurt, & it doesn't leave marks on my skin. I encourage you to call Biogen if that is what you want to take. Tell them your insurance won't pay for it & that you need help. They are very good about that. They sent it to me free for a couple of years. You really should be on something. I do it because I want to keep walking.

Thanks for sharing your story with us. I'm on Avonex since November 10. Till the first day it takes me about 8 minutes from cleaning my leg till dispose the injection. I don't think about it, at least, not before the injection. At the beginning when I started I took my Avonex Bag with me on injection days were I was not at home. I did it in restaurants, hotels, homes of friends...that helped to see Avonex as a "buddy" and not as an enemy. Since few month there is an Avonex pen and my Doc asked if I like to change, but no thanks, as long as I can handle the old school injuection I stick with it. This way I have more options if the day comes where I can't see this that easy.

After reading all this I feel...well not sure how I feel! I started on betaseron in 98 and was faithful about doing the shots till the beginning of 2012! A long time and talk about needle fatigue...I got to be needle phobic! I couldn't even watch anyone on TV like in a flu shot advertisement without getting shaky. Anyway after all these years I started having side affects again and talked to my neurologist and was able to get off the medication. So he had me take another MRI and in a few more months I go back for a check up and if not doing well will be put on something else again. In the mean time I am doing fine and feeling blessed to not be taking a shot. Probably will be back at it though.

I had a MAJOR ipir in copaxone last night. I passed out for a few minutes and my husband has the phone in hand to dial 911. The episode lasted maybe 5 minutes but it felt like forever.

I talked to my doc, and as predicted, I think we hit a vein.

I was told to continue my shots.

Last night was terrible. I thought about just skipping tonight... Just one night.

Then I read this. If I skipped tonight, I sure wouldn't feel like it tomorrow, and so on.

So, I'm sitting on my bed, ice pack on hip, no reaction. Thank you for posting this. Sometimes I feel like skipping but I never do. It's the only proactive thing I can do with this disease. I'm needle farifued but will continue on.

I am an Emergency Medical Technician and. Was the best paid on the road in my company, but i had a flare up a few years ago, and since then, everything went down hill. Got hurt last year, my back is a disgrace since then. In March, due to the economy, I was laid off, been on unemployment since then. My neuro tells me, every year, i should go on disability, and i have been refusing for the last 4 years or so. Taking a CPR instructor class and planning to take a few more instructor classes in the same area, because i think i am only entitled to $950 a month, and living in NJ with a mortgage and 3 kids, well, not going to be enough.I have been out of the ER since 2009, but I am sure I will not be able to get a job with my constant dizziness, fatigue and optical neuritis. So i guess i will have to agree with the doctor and apply for disability.In 12 years i never lost a patient, did 3 deliveries in my ambulance and whatever was thrown at me, i would tackle it.My partners used to say I never lost my coolness under stress. Two years ago I experienced my first bout with depression, its tough stuff, but I managed to keep working and it helped to get over it.But now, I am scared as hell.

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